By Lauren Webb, LCSW, Director of Support Services and Education
Many years ago, as I was driving along Lake Shore Drive on my way to a pediatric hospital in Chicago, with the sun beginning to rise over Lake Michigan, I was feeling hopeful. The neuromuscular team I was working on was starting a clinical trial for a new therapy that had so much promise, after many had failed. This trial fulfilled the hopes of the community and was eventually approved by the FDA as the first effective therapy for spinal muscular atrophy.
Today, promising ALS therapies are now on the horizon. How do we maintain a balance of optimism and realism? How do we overcome regulatory barriers to rapid and equitable access to the latest therapies and treatments? What can we learn from failed trials?
Hope is the most powerful weapon that we currently have in our fight against ALS. But how do we keep hope alive?
For me, hope lives within the countless advocates who are working hard to influence and improve the clinical research process. Hope lives when the ALS community comes together to ask the hard questions and to re-imagine preapproval access and pathways to accelerating approval. Hope lives with every new participant in a research study. Hope lives with education about ALS research. Hope lives with taking the next step.
As a member of the ALS community, here’s hopeful action you can take:
Learn about New Legislation and Contact Your Representative
The Les Turner ALS Foundation has joined with the ALS community in support of two pieces of legislation – the Promising Pathway Act (S. 3872) and the Accelerating Access to Critical Therapies for ALS Act (H. 7071), which is co-sponsored by one of our Illinois members of Congress, Rep. Mike Quigley (IL-5). To learn more the bills, visit here. The next step is to contact your representative and ask for these bills to be moved forward quickly.
Tools to Help Drive Conversations and Participation in Clinical Research
Clinical research in ALS at the Les Turner ALS Center at Northwestern Medicine encompasses a broad range of work, including biomarker studies, open label therapeutic studies, natural history studies and clinical trials. To better understand the available clinical trials and research, I encourage you to visit:
I am hopeful that these navigation tools and patient-centric trial design will enroll trials faster with awareness and community education. Compile a list of questions and have a conversation with your physician and ALS Care team about your local and national options. Just keep asking questions to learn more.
Hope lives with new technologies and creative collaboration to find a cure for ALS.
Last year, EverythingALS launched a study that collects speech audio and video data to analyze facial and speech metrics. The purpose of the study is to improve early detection and improved prognostic accuracy with software technology. You can participate whether or not your voice is affected by ALS or as a control.
I am looking forward to the day very soon when the sun rises and we have new FDA-approved therapies for people living with ALS. Let’s keep hope alive.
Our ALS Learning Series, where we offer monthly webinars on topics ranging from clinical trials to genetics and ALS, is another great resource to hear about the latest happenings and innovations across the ALS community. Visit ALSLearningSeries.org to register for our next webinar or to watch our previous programs